Patient Stories

Simone Svikhart

Photos: Slide show from Simone's trip to Capitol Hill.
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The Svikhart family from Baltimore joined with more than 30 other patient families from across the country to meet with legislators from their home districts and advocate against the repeal of children's health care initiatives. 3-year-old Simone charmed many on Capitol Hill with her vivacious personality. At one point, a staffer looked at her with a smile and said: "Hello, Senator!"

The Svikharts are an example of a hard-working, middle class family that has a good health care plan through Martin's employer--yet because of Simone’s complex medical needs, they must rely on the Model Waiver portion of Medicaid to provide intensive nursing care for nine out of the 12 months of the year not covered by his insurance.

Below is a post Shannon wrote for the blog, “With All Our Might,” hosted by the Children's Hospital Association, representing more than 200 children's hospitals nationwide.

Simone is a joyful three year old whose medical issues have taken her on a 15-month journey through some of Baltimore's finest children's hospitals. Born two months early, she had her first two surgeries at University of Maryland Medical Center. Simone struggled with many infections and had difficulty being weaned from a ventilator. The NICU staff worked tirelessly to help Simone through those tough days and provided emotional support to us.

Diagnosed with an array of different issues: hydrocephalus, GERD, craniosynostosis (early fusing of the skull), and chronic lung disease, it wasn't until she was diagnosed with Cystic Fibrosis (CF) that she was transferred to the Johns Hopkins Children's Center. The CF experts introduced special treatments such as chest physical therapy and CF medications to help clear the mucous from her lungs. She needed a gastric tube for feeding due to her failure to thrive and eventually a tracheostomy to provide a safer airway due to her fragile lung status.

Once more medically stable, Simone spent five months at Mt. Washington Pediatric Hospital in Baltimore. We knew "The Mount" was special from the moment we arrived on the beautiful grounds, easily found a parking spot, and were greeted at the door by the social worker and doctor!

The staff soon became like extended family and the QUIET, therapeutic environment helped Simone thrive -- not just survive. Though early in her life they'd been told "she may not go home", the happy day came after 13 months. However, this past January, Simone had her third skull surgery and suffered a stroke. Just a few months later, however, she regained almost full use of her right side. We credit her incredible therapists for helping her.

My family and I are forever in awe of the staff who've cared for our daughter "like their own." While still on a ventilator at night and being fed through the g-tube, she is breathing on her own all day and learning to eat by mouth. She now uses American Sign Language and often asks to Skype with her grandmother. She is fond of all the Sesame Street characters and loves to play with her cousins and friends. And, she's looking forward to Family Advocacy Day!